My doctor is in NY. If you are on Facebook, go to a group called Occipital and Peripheral Stimulators. That is where I found the best information, and I believe there are some members from Florida that could give you a reference.
Best of luck
Christine
I went to Swedish Medical Center about 2 years ago for ATN that I have had for 9 years. They told me they had two otions for me 1) experimental stimulator that cost around $100,00.00 and that likely insurance would not pay and option 2) chew gum. I was devistated and had a panic crying attack in the office, never had happened before. I think my expectation were too high. So now maybe in the two years ins has become a little more friendly about it???? She had this done at St.Judes???
How about an update on your St Jude stim. I have one as wellā¦
I had a few issues with the leads really getting the sensation to the top of my scalp, where my most severe pain is, so I contacted my local St. Judeās rep about six weeks after the implant. I met with him and he added some more programs, and now the top of my scalp is covered. I am still very happy with it! There have been two instances where I have had to turn it off completely, and that just proved to me how well it does work.
How do you like yours?
OMG! I am so excited, I have never heard of this for ATN! I will be looking into this- thanks christine 
How invasive is the trial procedure compared to the permanent one?
And is there a device that can be done over the skin first as a test to see if this Peripheral nerve stimulator is going to workā¦before getting it all implanted??
The trial is not very invasive at all. The leads are placed just under the skin, incisions are very small, and the majority of the device is external. I am not aware of anything that is over the skin that would be the same as the actual trial. Also, I think insurance companies could possibly require the trial to see if it is beneficial before approving the permanent.
Christine
Hi Christine. Iām hoping youāre still pain-free now thatās itās almost 2018.
My neurosurgeon recently recommended PENS for my Anesthesia Dolorosa (AD.) Your story gives me hope as Iāve been trying to stop my facial pain since 2009. Iāve tried a slew of meds & endured all the possible surgeries which resulted in a few months of relief, but ultimately in AD.
Iām going to try the PENS. If youāre still in this group, Iād love to know how youāre feeling after these 3 years. Thanks.
Welcome to the group, CHayes! Reviving an old thread like this is a great way of āmeetingā people and getting a long term perspective.
Our platform has changed since this last thread was last āliveā, and if you get this notification and want to resume the conversation, you will have to reconfirm your membership. You are still a member, but our new server still needs to check your email address. Itās easy, though:
- Go to the home page,
- Enter your email address for your user name
- Say that youāve forgotten your password
- Check the inbox of that email address for email from us (and your spam folder if you donāt)
- And follow the instructions in the email.
Hope to see you back soon!
Thanks for reviving, CHayes. Iād like to know too! Any updates from people who did this a few years ago? Howās it going? I am about to dig hard into options for MVD for my TN, but this sounds much nicer. Thanks! Faye
As well as posting to perhaps breathe some life into this thread, I emailed the OP, Christine3, privately to ask how she is.
Iām hoping that sheāll drop in and join us! (And Iām hoping even more that she is still having success with the PENS!)
Seenie